PowPow

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does anyone have any recommendations? we are in Northern Virginia. One of my PANS kids has some abnormal thyroid labs. her TSH has been elevated slightly for 6 months or longer. I am posting this here hoping to find one that is familiar with PANS, as Hashimoto's encephalitis can look at a whole lot like PANDAS. My kids have been extremely responsive to steriods for their neuro & psych symptoms. They have never been checked for any thyroid antibodies.

ophelia, thank you so much for your response. Any clue that I can get in to the mind of my teenage daughter, suffering as she is with this, is a God-send. Literally. She gets the "post=exertional malaise" as you so-aptly named it, as well. One day out or with others= the next in bed, not speaking, stuggling with OCD. Thank you, dear.

risperdal has been very helpful at times that it was needed. We mostly used it for rage and, as our neurologist insightfully calls it, "emotional glue". is he functional right now?

Anyone go & want to share about it?

Childrens hospital of philadelphia did our testing, though really any body can draw the spinal fluid and send it to mayo clinic for testing. It seemed to me that CHOP does not believe in PANDAS, per se. Autoimmune encephalitis, yes. PANDAS without clear strep onset, no. Trinity, can you remind me how old your daughter is?

Childrens hospital of philadelphia did our testing, though really any body can draw the spinal fluid and send it to mayo clinic for testing. It seemed to me that CHOP does not believe in PANDAS, per se. Autoimmune encephalitis, yes. PANDAS without clear strep onset, no. Trinity, can you remind me how old your daughter is?

If she has RLS, who diagnosed that? Who ordered the ferritin lab? Whoever orders it dhould be able to tell you how to treat it. If not take it to her pediatrician or general practitioner, tell them about the RLS and low ferritin, and see what amount they recommend. I would not even mention the psych stuff in conjunction with this. Deal with one thing at a time. This is a clear cut thing. low ferritin can equal RLS. Treat that and hopefully it will help!

Wombat, that prednisone dose is teeny, unless you weigh 20lbs. My kids start at 60mg or more. For a week. Then we go to 40 mg or 50 mg.We see improvements at about ten days.

Have you ever seen dr l in MD?

We have first hand experience in adolescent ocd residential center at Rogers. Feel free to PM me.

My kidz 10 was recommended by the sleep doctor. It has a dispenser that allows you to squirt it (or them to suck it) without touching the teeth. Use up the floradix. No sense in wasting it.

Mykidz10 iron formula. Over the counter, but maybe "behind the counter" or pharmacist msy ned to order. You can get it on amazon. Our sleep doc says ferritin should be closer to 70-80 for sleep issues. Maybe increasing that VERY low ferritin will bring big improvements! Take with vitamin C , avoid calcium containing foods around time of iron.

Curiosity is getting to me.....why is he adding another abx? Which doc?

Dr L, neurology, handles all our kids' abx needs.

I agree, does she have a primary doc- to get you going on this sleep issue? there are certainly severe sleep problems with PANS- my daughters' got better after pex, but I wonder if you have something else going on. Is she otherwise developmentally normal for her age?

Trinity, I do not know from first hand experience, but from hearsay, I do not think you will get to see him in the ER. he does not see kids, and she is a young teen, correct? If she is really not sleeping AT ALL go to any ER. I am afraid you are going to end up with them sending her to a psych hospital. Just keep holding on until dr t or dr l can help you. Was she ever neuro-typical?

There have been reports of negative blood and positive spinal tap. There are lots of articles about NMDA online.

Beesknees, Maybe it is the anti-inflammatory effect of augmentin & not strep? It has been studied on Ulcerative Colitis for this mechanism of action. Just an idea. So glad you saw such quick effects. We recent saw similar improvement from augmentin alone, also.

Many of us have seen this exorcist child in our homes. I will tell you, it can get better! after lots of time, ivig, pex, steroids, prayer, abx- for us, anyway Keep praying, treating with a GREAT doc (& during a rage, duck!) Put away breakables, sharps and try to ignore the profanity.

Yay Surfmom! Does the ativan help the catatonia? so joyful to read this-

Excellent. Hold tight if you can until then. make a organized timeline of her illness, labs, symptoms, meds, as best as you can since onset. Do you have videos or photos of her worst or her good before onset? This stuff is invaluable to the docs.

Yes! Exactly who I mean. So glad. Is it a long wait?

Mom with OCDson gave you great advice. I adm not sure a counselor us what you need. How have you treated pandas in the past? Abx, steroids? This sounds like a very scary, though not suprising PANDAS flare. Do you have a good pandas doc you can get to asap? I would steer as clear as possible of psych er, the chance of them providing real help is nil. Make your home safe, do not leave her alone, and get on the right PANS tx fast.

Can you travel to MD? I strongly suggest you see Dr Latimer in MD. I am going to pm you more later,.on my phone now and cannot type well.